104: The Jar of Joy

January 2020… new year, new decade, new term and revitalised after a couple of weeks off.  Many things to be grateful for and not a time for resolutions… except… I follow Liz O’Riordan on Twitter.  Liz is a Breast Surgeon with recurrent breast cancer who has written the complete guide to breast cancer and has a really interesting take on this disease as she has been both sides of the desk and diagnosis.  I saw her Ted Talk  about her “jar of joy”… a brilliant and simple idea to help keep life in perspective and to find something positive everyday.  This is it:  Ted Talk

So I have adopted her idea and have two jars.. one for home and one for school.  The jars once held huge olives from Lidl… something to be joyful for straight away as the olives had to be eaten first.   A very simple premise… all you require is one jar, one set of post it notes and a positive frame of mind. Even on the darkest days there will be something that I can find joy in.  Some days are harder than others… but a good cup of coffee, finishing a piece of work, a cracking NQT observation or just getting to the weekend. 3 Jan 2020

103: Christmas & New Year so be of good cheer.

A picture paints a thousand words…reportedly first used by Frederick R. Barnard in Printer’s Ink (December, 1921), while commenting that graphics can tell a story as effectively as a large amount of descriptive text.  So these images sum up Christmas and New Year with family and friends – lots of smiles and laughter, a large Sandy shaped hole and a new family dynamic but great to have everyone home.   These photos don’t include visits to the movies to see Cats (I enjoyed it!), Little Women (enjoyed this more), trips to Totnes on the train, mince pies and mulled wine party and a letter saying the mammogram was clear.  It was all good.

102. The run up to 2020

Today life is in perspective, the hail has stopped and the sun is out.

The run up to the new decade had highs and lows.  Family highs, when we got together, and family lows when relatives had to return home.  Dad’s funeral was over, it had been a cracking send off and he’d have been proud.  There was about a month between the funeral and Christmas so it was back to work and start a new normal – I was a single parent person now.

The run up to Christmas in school is wearisome if you are in your mid 50s, grieving and trying to pretend everything is fine.  There is the excitement about the forthcoming holiday, the anticipation of getting the right or best presents for everyone, ensuring the feast is suitably festive and ensuring that lessons are still being taught, students are engaged, colleagues are well.  It is exhausting and everyone looks and feels a bit run down by the end of term.  I was running on empty, trying to be the most efficient woman at school, attempting to fit in pilates and spin, busy, busy, busy… not time to think, no time to process. The human body can take a lot… mine had had enough as I had a huge cold sore and looked ghastly.   I’d also had my second annual mammogram care of the Primrose Breast Care Centre… always a time of unease, not the mammogram itself but waiting for the results.  The clinic was not too busy, it was efficient, the radiographer friendly and recognised me as a trustee.  It was all perfunctory and the right boob was in place soon enough, the radiographer wasn’t happy with the first set of images and so we repeated the process… better to be safe than sorry.  I chatted away about the Primrose charity, the ball, la la la la la la… not about being squished and wondered… if breast cancer comes back where will the make a new boob from.. nothing left on my tummy! (I’ve decided it won’t come back… if it does it will be a secondary form and it won’t manifest it self in my right boob… but it won’t… come on, cut me some slack… it won’t – despite that little voice at 3am saying “actually it is just lying in wait and when you’ve finished the drugs in 7.5 years it will pounce”.  It had better not or I really will be cross.

However, there was a lot to look forward to as my eldest son Marcus and his wife, Marie were flying in on the last day of term and they were going to be here for a week to ten days.  Our Aussie friends – my great “fiend” Antonia, were going to be over for Christmas with their family and down here for New Year.  Usually, I would have said “stay with us” but I didn’t know how long the kids were going to be home for and other friends had offered to have them to stay and do New Year’s Eve.

The 20th December was the end of term, it was Christmas Jumper day at my school and I was resplendent in a completely hideous, polyester red jacket with Santa plastered all over it.  Most of the staff and many of the students also dressed up and the feeling was festive.  The deal was that lessons were to be taught as usual for most of the morning and then the final period was spent with tutors.  Whist Christmas is a time of celebration for most it is also a time of high anxiety for other students.  School offers sanctuary, it ensures there is a meal and warmth, friendship, someone to talk to if there is a problem who might be able to solve that issue and make going home just a bit better. The students finished at lunchtime and we had a staff get together to say farewell to those leaving, to  say “we’ve made it” to the end of term.  This was a bit rich from me as I’d only been back at school since 1st November so had done less than 50% compared to my colleagues – I didn’t have the right to be as run down as them.

As soon as decent I packed up and rushed home… the house was empty, this was not right as Marcus and Marie should have been there.  Their bags were here but they had gone for a walk to get a breath of air after their overnight flight from Seattle and journey from Heathrow.    I was a bit disappointed but got over myself when I saw them.  Phoebe was home too and later that afternoon mum was coming round so that we could go to the Primrose Carol Service.

The year before I had been one of the speakers at the service and this year I was part of the congregation or audience.  Just as well as we arrived late due to my inability to read the time on the web site.  Parking was an interesting experience and we snuck into the back of the church.  This comes from the Primrose Facebook site “The Stanborough Chorus and both the choirs from Holy Cross & The Cathedral school who brought the Christmas magic to the Cathedral and made the whole evening a truly festive and beautiful event. In total we raised over £1,000”.  It was lovely and made Christmas seem real.  Mr X was one of the readers, my lovely friend Joy who now works at the Primrose Breast Care Centre also read, the school choirs were great, the Stanborough Choir amazing, the church was beautiful (and the heating was on!) and mum, Phoebe and I sang with great gusto – we are on the right of the photo on the back row.  The holiday had begun.Xmas Service Primrose

1 m christmas jacket

 

 

101. A Fair Isle Cardigan (an emotional bomb)

It is half term, the weather is dreich, there have been huge storms, large parts of the UK are under water and last night a lightening strike hit a house a couple of miles away and the roof caught fire.  Locusts in Africa, fires in Australia, flooding here… it feels a bit apocalyptic..

I haven’t written about Christmas, New Year or my new nipple yet and I suppose a blog doesn’t have to be chronological although for my ordered, non blue sky, way of thinking it should be.

Today I helped my mum (Sheena) sort out my dad’s (Sandy) belongings.  It was a family affair, Nick brought his tool kit to do some minor repairs to  a bathroom cabinet, Phoebe came to for support, Sheena had bought chocolate biscuits and I was supposed to bring bags for life (odd really given today’s job) to help sort Sandy’s clothes and I’d forgotten them.  When we arrived at the flat mum had already made a start and was a little distressed.  When I saw dad’s Fair Isle cardigan hanging up in the wardrobe I too became distressed.  This red, white and blue cardi, which was one of his favourites had become an “emotional bomb”.  I have stolen this term for a lady on Twitter who has just cleared her dad’s garage.  The morning was punctuated by rain outside and a tsunami of tears in, all I could say was “oh dear….”

We made a start.  Nick retreated to the bathroom then to an electrical shop to buy the bits make good the repair.  Phoebe, mum and I went through the wardrobe and sorted clothes into – charity shop donations, items to be sold and items to be kept or handed to specific people.  It was a hard morning as we sifted through a stack of Orvis shirts, a wide variety of clothes, suits, hats, fleeces.  Five bags were to go to St Lukes hospice shop including two large, green Aran sweaters which weighed a tonne (they may have been bought on a cruise holiday around the British Isles).  A couple of bags were sorted of items which could be sold – this was Phoebe’s domain and already she has photographed them, put them on various sites and had some interest in them. The Fair Isle cardigan has remained in the wardrobe with a favourite shirt and jacket.  It wasn’t hard labour it was the emotional bomb as we remembered dad wearing the cardigan as mum said he had really loved it.  He wore it when he was here for Christmas some 14 months ago, his last Christmas with us.

Once we’d cleared the space we then helped mum by sorting her bits and pieces out, moving summer clothes into the new space – the cardigan is there, nestled up against her summer dresses.

My dad is so much more than a cardigan, there are reminders of him everywhere in the flat, in our house, in our city, in me, my children, my brother and his children.  On Friday we pick up dad’s ashes but he is much more than that – physical remains may have diminished but emotional ones still burn bright.  It has been an emotional bomb of a day.

Christmas 2018

100. Muffled drums and the last post

I haven’t written my blog for quite sometime, not since my dad’s funeral.  I think I have thrown myself back into family life, work, preparations for Christmas and being busy is a great diversion to thinking things through, and I use this blog as a way of drawing a line under events, and I wasn’t sure I wanted to do this as it seems final. However, it is time to write about Dad’s farewell.

When we arrived at Weston Mill Crem there was a sea of Green Berets to meet us.  One of my dad’s great friends was resplendent in tartan trews took mum by the arm and we walked past friends who had taken time out to celebrate dad’s life.  It was comforting to see my own friends too who gave a tender pat on the arm, a squeeze of the arm, a wan smile.  The chapel was packed, there was standing room only and some the mourners waited in the lobby where they could watch the funeral on a TV.

The coffin was resplendent with the Royal Marine Flag, dad’s beret, medals and bouquet of yellow roses.  As we walked in one of dad’s RM friends was beating a muffled drum which gave us the beat to enter in and make our way, past standard bearers with dipped flags and to the front of the chapel.  Trevor introduced the proceedings and welcomed the mourners, very soon my brother and I were invited up to read the Eulogy.  A deep breath and away we went, we read paragraph by paragraph, raised a few smiles, the odd chuckle and I managed to hold it together until the part where I had to speak about how well loved dad was – fortunately my brother could step in.

It was all very moving – we sang hymns, dad’s friends Trevor and Bob read prayers – one to absent brethren and the Royal Marines prayer.  We listened to Royal Marine music and at the end of the service the last post was played  by a Royal Marine bandsman. It was very poignant and everyone was in tears.  The finale was the Corries playing “To the land of Macleod” – the front two rows.. the family… we all sang between the tears as we walked out.

There is a no mans land being in limbo effect immediately after the service.  We were guided out to a patio area and the congregation came through and spoke to us.  So much kindness shown, so much love and respect for dad.

The next evolution was to go to the New Continental for the Wake.  Back in the fast blacks, a sense of relief that the service was over and that it had gone well.  We felt we’d done right by dad, followed the plan of the O group meeting 6 weeks before.  Dad’s wishes had been executed with military precision.

The driver of the fast black, Sean, told us that he too was a former military man and knew dad through the Royal Marines masonic lodge.  He was very sorry for our loss.

We were all very sorry for our loss and that the fight was over.  Dad was now in the Land of Macleod.

I will go, I will go
When the fighting is over
Tae the land of MacLeod
I left to be a soldier
I will go, I will go

The king’s son came along, he called us all together
Saying, Brave Highland men, you will fight for my father
I will go, I will go

I’ve a buckle tae my belt, a sword in my scabbard
A red coat on my back and a shilling in my pocket
I will go, I will go

When they put us all on board the lassies were singing
The tears came to their eyes when they heard the bells a-ringing
I will go, I will go

When we landed on that shore and saw the foreign heather we
We knew some would die and lie there forever
I will go, I will go

When we came back through the glen winter was turning
Our families in the snow and our homes they were burning
I will go, I will go

99. The Fast Blacks

Four and a half weeks after my father died we had the funeral.  This had been pre planned with Dad, after his terminal diagnosis we had an “O group” – a meeting where his great friend Trevor and the family discussed how the funeral was to be carried out.

The run up to the funeral had been frenetic for me.  I have returned to work.  People say “you look well” and I do (as long as I keep my clothes on.. without them it is a different story).  The first couple of weeks have been hard as I have had to meet new classes, put together my class folder so I know who has what additional need and who has to be challenged more, set my alarm for 6.30am and get up, put on my suit and assume the role.  So far so good – no tears at work.

Thursday was a hard day, we had one youngster who was extremely distressed and had to be sent home and I did an observation of one of the newly qualified teachers.  Giving feedback was tough but receiving it must have been much worse.  I had four lessons to cover (where you set work which one of your colleagues can deliver) and to be frank setting cover is harder than going in and teaching.  I had to leave school at 4.30pm to meet mum, my brother and sister in law at 5pm at Pier One.  Great cafe, fabulous views and a real log fire (the views over Plymouth Sound aren’t that great at 5pm in the dark).

There had been a bit of tension between myself and my brother.  He’d been on holiday in the Caribbean and I’d gone back to work, to be frank I was quite resentful as our holidays had disappeared this year due to my rebuild. My resentment was close to the surface but well controlled as my sister in law said it had taken then a good few days to decompress when they joined their cruise ship.  I let it go.  We will have holidays in the future, I’m back at work and love my job.  I’d written and re-written the Eulogy and then my brother sent me his version, which I pinged straight back to him as I didn’t feel it was appropriate. He has his own demons to fight and didn’t need to fight me too. We had coffee, had a very amenable chat and then went home – my brother took mum back to the flat and we said we’d see them the next day – 22nd November – Funeral day.

Once home it took a while but eventually I set my cover, sent out various emails, shared Google Docs and about 9pm sent my brother the final version of the Eulogy.  Sleep was evasive that night and I felt very stressed.  Stressed about setting cover and stressed about what was to come the next day.

Funeral day – my youngest son and fiancee were home, as was my daughter who’d put together a great presentation of family photos.  They were going to make their own way to Weston Mill Crem. At 10.45am Nick and I drove up to mum and dad’s flat, met my brother, sister in law, nephew and niece and waited.  Mum was stressed and couldn’t find her keys, I couldn’t find my phone… we calmed down and found everything.  My friends came to pick up my niece and nephew and that was that, the 5 of us who were going in the car.  The time started to come round towards midday and my sister in law wondered if we ought to phone the funeral company. No need as the two “fast blacks” (as dad called them) duly turned up.   Mum who had been so stoic became tearful as suddenly it was all terribly real.  The funeral director, complete with Top Hat, invited us out and into the family car – before we went we could see the hearse with Dad’s coffin, the Royal Marine Flag, the yellow roses which he’d always bought for mum, his medals and Green Beret.  We got into the family car and followed the hearse down Tavistock Road, onto the A38 and along the Parkway.  Time was ticking and we had to be there at 12.15pm.  So far the “O group” plan was in place.

98: Time

In some ways time seems elastic.  It is only 8 days since my dad died and in some ways it seems like months ago. In other ways it feels like hours.  There has been so much admin to do that time has been filled and before I know it hours have passed and only one job on the to do list has been ticked off.

Dad died on the morning of Tuesday 22nd October  – Tuesday:  St Lukes to wash his body, Funeral director to take his body away, Sainsburys to do a food shop, food prep, cook and serve a roast at home.  We even had champagne to toast dad.

Wednesday:  Funeral director – dad had pre paid the company for the basic funeral so it was a case of finalising arrangements, working out cars, routes, etc.. and telling the young female funeral director that dad wanted a man to lead the procession.  She didn’t bat an eyelid and was extremely professional.  I think she may have been a bit surprised when we told her the funeral was planned and that I had a draft order of service which I’d email over later.   Later that day my brother, wife and dog (or bloody f**king dog as I prefer to call it) packed up and headed home.  They’d been with us for 12 days, their input had been invaluable and despite the geographical distance we felt much closer as a family.  Mum and I walked to the GP to pick up the relevant document to take to the registrar.  In the afternoon the Livewell driver arrived and removed the medical bed and all the other equipment which had been used to help dad.  It felt very final – there was no longer the pfff noise of the air mattress.  The bed was dismantled and taken out of the flat.  We all cried.  However, my mum was very practical and we gave the place a good clean and moved furniture back.

Thursday:  Nick and I took mum to register the death.  The registry office is on the Hoe and has good views over the sea and memorials.  As we arrived so did a wedding party, as we went to the first floor so we met a set of new parents registering their child.  We were here for a death.  The registrar was very matter of fact to the point of being severe – just as well really as it wasn’t a time for small talk or being jovial.  There are official elements which have to be carried out and these were in a rather brusque fashion.  One positive is that there is a “tell it once” service so the registrar can inform Government and Council agencies.  We went to Pier One for coffee and then we went home for lunch, took mum to the supermarket and then I took her home.  It was very difficult to leave her as this was the new reality – a two person flat with a sole occupant.   She was being very stoic saying “this is what it is now”.

We have a family Whatsapp group and we all ensured we sent messages for mum.

Friday:  There was admin to do, official letters to write and be signed, emails to send and then in the afternoon we had to go to mum and dad’s bank.  That was a hard meeting and although they have a bereavement section it was still business like as the joint account was changed to a sole account.  All of dad’s accounts were closed, balances transferred and home insurance changed.  Another tick off the list.

On Saturday one of Dad’s friends took mum out and I went to a class at the Life Centre.. total toning.  I’d only done pilates up until this point but I know the instructor well and gave it a go.  I really went for it, crunches, knee lifts, squats, mini weights… Nick met me afterwards to do a proper food shop – a get back into a normal routine shop and after homemade soup I decided I’d clean the house from top to bottom.  Nick and Phoebe had been out at a charity tea event and I relished having the time to do a deep clean.. there would be no evidence of the bloody f**king dog in this house.  Beds were changed, towels sorted, hovering, washing down… I’d bought “pink stuff” to clean.  I was exhausted in a good way and when they came home I ran a bath, put on my PJs and watched Strictly whilst eating a curry.  I slept well that night.

Sunday:  It wasn’t raining so Nick and I walked to the Royal William Yard in the sunshine – cold and crisp Autumnal days are the best.  We walked past Devonport High School for boys where lots of small children were carrying out rugby drills and bigger ones were playing.  Our own children had played for Devonport Services a lifetime ago so it was great to see the tradition going.  The Royal William yard is a gem of a place, I wouldn’t like to live there unless it was in Residence One with a walled garden and a terrace overlooking Drake’s Island.  The redevelopment isn’t on a par with Gunwharf Quays in Portsmouth and that is partly because of the access and lack of parking, the architecture is beautiful and it is a good place to go for a meal or a coffee.  There is a new artists quarter which has opened up and after coffee we went to the pottery to see some pots being thrown.  There will be a farmers market and an artists market there this weekend and I think we will visit. We picked up the Sunday Times on the way home, read for a while and then made a roast dinner with lots of autumn vegetables – Nick picked up my mum so she would join us, not least as we could all then watch the Strictly results show – we (at least Mum and I are avid fans).  After strictly Nick then dropped Mum home.  It still didn’t/doesn’t seem real that dad isn’t here as he would come for Sunday supper and then say “Right Mrs Macleod, time to go home!”  It hadn’t even been a week.

Monday:  The first stop on Monday was to take mum to the Nuffield hospital to have her 6 week check.  She walked in without her crutches.  The surgeon met us and took us through to the office where on her notes there was a yellow post it note “daughter phoned, husband died”.  The surgeon gave his condolences and mum wept, so I spoke for her and told her she’d been fantastic at doing her physio and that her recovery had been very difficult as dad had been so ill then in palliative care.  She came home with us to have lunch and I was able to do more of the admin – now all the utilities are in her name and will be paid monthly so it is easier to budget.

That afternoon I had a meeting about my breast reconstruction.  One of the breast care nurses had invited me to up to a training day to discuss the patient experience as apparently I am fairly unusual having had a skin sparing, temporary implant mastectomy to then full DIEP reconstruction. Nick dropped me up as parking is even more impossible in the impossible car park.  I had to wait in the Macmillan centre – the Mustard Tree.  I arrived with my breast cancer folder and was met and taken into the training room full of health care professionals.  They’d organised a seat for me but I told them that as I’m a teacher I prefer to stand and then told my story, referred to my folder, showed them my coaching solution to breast cancer and took questions.  I asked if they wanted to see the scars and so I showed them… no one was sick but one or two looked a bit repulsed at my abdomen scar.  They were more interested in the breast scar and one asked to feel the breast to see if it felt normal.  It does but I don’t have any sensation in it. I got a round of applause at the end and the BCN cried as she said she remembered me getting my diary out and telling her and the surgeon which dates suited me best – ahh little did I know then that the NHS and one’s own diary seldom match.  This had almost felt normal – there was no mention of death or palliative care.  I caught the no.34 bus home – not normal but quite fast and efficient, quickly got changed and went to pilates at the Brickfields.  An extraordinary class taken by a young French woman who was very enthusiastic and actually said “oh la la” when demonstrating the exercises.  I enjoyed it so much I’ve booked another session this week and Monday again next.  Oh la la.  After supper I reorganised the white files – home/personal for mum with all the updates.  All dad’s information is still in them but in a new section called “Sandy”.

Tuesday:  Car admin. My folks had a large black mini SUV which was helpful for dad to get in and out of.  It was expensive and too big a vehicle for mum who didn’t like to drive it into congested areas.  We took mum and the car to the dealership to work out the deal on returning it and purchasing another.  The weather was foul, cold, driving rain, windy as we trogged around the used car lot.  The Liverpudlian used car salesman had a good patter and encouraged mum to sit in a variety of cars.  She tried a little silver Corsa and drove it around the car park.  In the office a deal was struck, there was just the issue of changing the personalised number plate to the original one on the SUV before the dealership could take it in part exchange.  With a bit of tooing and frooing the admin was explained and another letter, death certificate and copy of the will would have to be sent to DVLA.  When we went back to the flat we did this, got the photocopying done at the local library, sent the letters off (all signed for) and then I walked home in the rain.  Another job ticked off the list.  Mum had made more decisions and has taken on all the household information.  I’m proud of her – all these jobs had been dad’s domain but she is managing it all very well.  It had been a week since dad died. Time seems elastic.

 

 

 

 

97: The end of an era

After a restless night my mobile phone rang at 7.40am, it was my mum, she was crying and said that dad had just gone.  During the night the carer and mum had called the district nurses out twice to administer drugs to help settle dad and dry up the secretions in his chest and throat, they been out at 3am and 5am.   She said that she’d been talking to him and was holding his hand when he just stopped breathing.  It was just after 7 o’clock in the morning.

I cried.  I hugged my husband and daughter.  Relief that the final few days were over and a deep visceral grief as my dear dad was dead.

I arrived as soon as I could with my sister in law, my brother had already gone up to the flat.  My dad’s body was there and it was warm but my dad wasn’t, he hadn’t been there since Saturday afternoon.  The doctor was there and completing paperwork, he said to mum that she must come to the surgery if she was unable to sleep or needed help.

It is strange how grief affects us in different ways. I just wanted to be quiet and when Nick arrived, I sat on a chair next to my mum and held hers and Nick’s hand.  My brother went into action mode – he wanted to phone people to be doing, sorting, fixing….  I may have said “just shut up and be quiet, sit down”.  Dad was lying there in the sitting room, the struggle was over and he looked the most at peace that he’d been in days.

Two St Luke’s hospice health care assistants arrived, they washed and shaved dad and then dressed him.  They were so gentle and respectful.  The young man, Archie, had come out on Saturday afternoon, like dad he too was a Mason and and he talked to dad as if he was still here as he gently shaved his face.  They then dressed him – Royal Marine rugby shirt, Royal Marine green sweater with the Falkland Islands embroidered on the chest, blue penguin pj bottoms – another nod to the Falklands and Royal Marine socks. The syringe driver had to be removed later by the District nurse when she came to collect all the controlled drugs.

A friend of mine had suggested that we all look at photos – we dug out the big box of photos and started going through them.  Tears and laughter, happy memories of holidays and family occasions.

The funeral directors had been contacted and mid morning they arrived.  Two immaculately dressed men in pin striped trousers, black blazers and brilliant white shirts knocked on the door, came in to see dad and then said we could have time to say our final goodbyes.  We did, we all gave dad a kiss and hug.  The funeral directors brought in a gurney and then wrapped dad carefully in a white fabric whilst we watched.  They were very respectful.  He was covered in the black cover and then my brother played “We will go, we will go, to the land of Macleod” as dad was wheeled out.  We all wept as that was it.  Dad was loaded into the back of the black van and they drove off.  That was it he was gone.

We went back into the flat – the medical bed was empty.  It was the end of an era and we were all numb.  We did the typically British thing and had a cup of tea.

 

96: Overwrought, overtired, overwhelmed.

Today is Monday 21st October, Trafalgar Day.  The Royal Navy and Royal Marines have a tradition of celebrating this defeat of the old enemy.  We joke with dad that he was at the battle, not least as he has a painting in his sitting room showing a ship of the line with Royal Marines in red coats.  This painting was given to dad by mum in 1989.  Currently his medical bed is under this painting and dad is lying on the bed, his face is swollen, his breathing laboured and he sounds as if he is choking.  This is not the end of life we were promised when dad was discharged from Derriford Hospital on 30th September – three weeks ago today.

It has been a traumatic weekend and I’m going to describe some of this without being too graphic.  On Saturday morning dad was able to ask for sips of tea but had declined and the decline was palpable.  Although he was able to sip tea through a straw he was coughing immediately afterwards, this was the same with the oramorph too.  When dad coughed he said he had pain in his ear.  This was the first time in this whole episode that dad had complained of pain.  When we looked there was a swelling under his ear.  During the course of the afternoon dad became more and more agitated, he said he was in greater pain in his leg and back.  One of the St Luke’s nurses came to visit and gave dad a top of the settling drug but there was an issue.  The prescription for pain relief as a “stacked dose” (this is a dose on top of the syringe driver) had a ceiling in micrograms and it wasn’t enough to touch the pain.  It was awful to see dad in such discomfort.  He had been so stoic all the way through and this seemed particularly cruel and unkind.

To increase the dose a GP has to amend the drugs chart.  As it was a Saturday the only GPs available were through the out of hours service.  I have never experienced such a half arsed system which completely inconveniences the patient who is in pain and at end of life.  I understand entirely that controlled drugs have to be controlled.  The St Luke’s nurses were not allowed to administer a greater dose than that on the drugs chart as that was what had been prescribed.  Eventually, after a lot of intervention by the community hospice nurses we were advised to go to Devon Doctors to have the drugs chart written up.  My husband, sister in law and I went up. Once there we had to wait for one of the GPs to come out and sign off the drugs chart to increase the pain relief drug and give a range for the application.  Once home we could call the district nurses who could then give additional drugs.  As dad had been so unsettled all afternoon and evening my brother and sister in law decided to do the night shift.

They didn’t get much rest.  We were all overwrought and in the middle of this melee is my mum with her new hip, worried about the family as well as dad.  None of us is resting much as when we go to bed we expect a phone call to say come back.

Sunday morning arrived, no phone call so Nick and I went up to the flat with two cartons of cook up croissants and home made marmalade.  My brother and his wife looked exhausted as they’d been awake all night.  They’d called the district nurse out at 5am to administer another stacked dose of drugs to help settle dad.  I wondered and voiced if we were doing the right thing keeping dad at home, despite that being his wish, mum simply said “where else could he be – this is what he wanted”.  My brother, being practical said it would be too difficult to move him.  The day settled into a routine of sorts.  Andrew and Teresa went home to try and sleep, mum and I walked to the local shops, whilst Nick stayed with dad.  I stayed with mum once Nick went home and we  pottered and talked quietly until the others returned.

The syringe driver is updated between 11 and 12 each day.  On Saturday and on Sunday the District Nurse Team Leader came to visit.  She was very efficient, had taken us to one side the day before to say we were to monitor dad for changes in breathing.  She estimated that end of life would occur within 24-36 hours but emphasised that it wasn’t a precise science.  On Sunday morning she calculated the new doses for the syringe driver by adding in the stacked doses from the night before.   She showed up how to clean up the secretions in Dad’s mouth and how to administer a gel to keep his mouth moist.   Later when the St Luke’s nurse came it was noted that one drug was running very low.  She phoned the out of hours GP for a repeat prescription.  This had to be collected, with ID from the out of hours service back at Derriford.  The drugs had then to be sourced, there was one pharmacy open until 6pm on Sunday.  Andrew and Teresa rushed around to get the prescription, then the drugs – it all adds to the stress of a very stressful situation.   More drugs were given to settle dad whose chest was sounding very “bubbly”.  We were reassured that the breathing noises affected us more than him but we didn’t feel convinced.  That evening we all gathered together to eat in the sitting room. It was almost a week since dad had had the syringe driver inserted to make him more comfortable and less agitated.  It seems almost surreal, we all sit and eat whilst watching the tv or chatting and dad is lying in the hospital bed.  The nurses have all said that this is comforting for him as he can hear our voices.

Last night we had cover to do the night watch.  An Estonian HCA arrived, was given the hand over and we went home or to bed. She was very kind, especially to my mum who woke at 4am and went to see dad and later at 7am.

Today – I have not covered myself in glory.  After phoning mum I drove up to the flat, she’d had some time with just her and dad and had been comforting him.  When I arrived with the pots and dishes from the night before – part of the new routine, we cook something simple and take all the dishes home to put in the dishwasher, mum was in her dressing gown and surgical stockings.  She has been admirable in wearing them as instructed.  After a shower we settled down to chat and make sure dad was safe and secure.  His face has become more swollen and red, it has tracked onto his neck and chest.  Val, the carer arrived and together we carefully washed dad by moving the hospital bed and using a flannel to sooth him. We can’t move him, he is not able to talk anymore and the noises from his chest and throat were far more worrying.  It is a noise like someone is, I imagine, drowning.  Dad was also moving his legs and arms slightly, as if he was not comfortable.  Babies lift their knees when in pain, he appeared to be trying to do the same.

Andrew and Teresa arrived and I was able to go off for a dental appointment – how strange to do something as routine as this in this period where nothing is normal.  Following this I popped home for an hour and Nick and I walked to Devonport Park, had a coffee in the little cafe, in the Autumn sunshine.  Again.. something routine, something normal in an abnormal time.

A little later I returned to the flat – the plan was to take mum out, we didn’t leave that afternoon.  Once again a district nurse had visited, this one had not added the stacked dose to the syringe drive and dad was agitated.  Later the St Luke’s nurse arrived and given the amount of secretion and the discomfort administered a new drug to help dry it up.  She also gave a stacked dose of the drugs to ease pain and settle the patient.  She noticed that the pain relief drugs were running low and had not been ordered by the district nurse.  So groundhog day… telephone calls to order the controlled drugs, calls to pharmacies to see if they had them in stock… the one next to the GP only had 7 ampules and 30 had been prescribed.  Another pharmacy had an additional 10 but would require another prescription.  Andrew and Teresa went off to collect prescriptions, drugs, etc.  More stress which was not required.

A new St Luke’s nurse arrived and administered a stacked dose of drugs, she instructed me on how to help her move dad to make him more comfortable and together we rearranged the height and angle of the bed and the cushions and pillows.  She told us it was important to make dad feel safe and secure, to hold his hands firmly and talk gently, to have music or the tv on in the background, to give him comfort.  My mum stood with dad and called him “pet lamb” so tender.  The anti-secretion drug was running low and hadn’t been prescribed to be added to the syringe driver.  Something else which would now have to be altered. She was great, practical, reassuring, measured and had seen it all.  She phoned her colleague for advice having noted that the other stacked drugs hadn’t been added to the syringe driver, she saw dad was agitated and did all she could to calm him and called him “boy”.   She had to go and promised to be back if he was distressed at all – but she did not have authority to change the syringe driver.

About 7.30pm two St Luke’s HCAs arrived – dad was settled and so I took them into the kitchen and told them was a complete disaster the care had been, how stressful it was to have to run around and source additional prescriptions, drugs, etc and how it was dreadful that the nurse had not been allowed to top up the syringe driver and that her boss should be told this in no uncertain terms.

The St Luke’s nurse returned… I had caused upset in the office as the HCAs are the eyes and ears and report back.  The colleague the St Luke’s nurse had spoken to earlier was not her boss, she was asking about adding a different drug for secretions but it wasn’t advised.  I’d misunderstood.  She explained about the strict protocols which have to be followed to ensure patient safety with controlled drugs, she laid out the rules and regulations, helped by phoning the district nurses so that on Tuesday the syringe driver would be updated correctly.  She explained how stretched they were and the demands made on their service.  I listened whilst she explained that nurses are issued with a PIN registration number and if they lose this due to malpractice they can’t work.  It went someway to help but it doesn’t help the fact that the system doesn’t appear to work in favour of the patient – but what do I know, I teach Geography.  She told me I was over tired and needed to go home, I was too close to it all as it was my dad.  I wanted to wait with mum until the overnight carer arrived but my brother agreed.  To top it all she then looked at mum and noticed her ankles looked a bit puffy so gave her some advice about elevating them and protecting her heels.  This lady was nursing the entire family not only the patient.

I came home earlier than expected.  I went to bed and lay awake. It is now 1am on Tuesday 22nd October.  No phone call has come, I can only assume and hope that Dad is comfortable.  The night watch have the numbers and know what to do if he is not.

I read the book, written by the palliative care consultant.  Most end of life episodes appeared to have a similar pattern – the patient eats and drinks less and sleeps more.  Most of the deaths written about took place in a hospice where all the drugs are easily to hand.  I thought it would prepare me for this stage but it hasn’t. The author didn’t write about having to change drugs charts, source drugs, check the syringe driver had had the stacked doses added, she didn’t write about the noise of the secretions or how the patients lifted their knees to show they were uncomfortable.  Each “journey” is unique.  She didn’t write about families spending hours together in a sitting room in a flat with the patient lying in a hospital bed.  I don’t know how my mum has the strength to carry on, she is admirable, it must be a deep love to fulfil dad’s wishes to die at home.  The St Luke’s nurse said I was like her so I’m going to take that as a compliment.

I’m going to try and sleep now as I don’t know what tomorrow will bring.  I have written cards to the three main St Luke’s nurses to try and atone for some of the mistakes of today.

We are overwrought – wrung out as grief has been in play for four weeks since dad was told there would be no more active treatment.  Overtired – none of us are sleeping well and are on high alert. Overwhelmed – by the system, by the processes, by dad’s strength as he has amazed the professionals by still being here, by the emotion of this.  In this poem we should change I for we and God for family.

This Too Shall Pass
If I can endure for this minute
Whatever is happening to me,
No matter how heavy my heart is
Or how dark the moment may be-
If I can remain calm and quiet
With all the world crashing about me,
Secure in the knowledge God loves me
When everyone else seems to doubt me-
If I can but keep on believing
What I know in my heart to be true,
That darkness will fade with the morning
And that this will pass away, too-
Then nothing in life can defeat me
For as long as this knowledge remains
I can suffer whatever is happening
For I know God will break all of the chains
That are binding me tight in the darkness
And trying to fill me with fear-
For there is no night without dawning
And I know that my morning is near.

95: The power of love

Today is Saturday 19th October and I’m going to start this entry with a text from Miles which reads:

“We are on the train. Sorry we didn’t see lots of grandma.  Lovely to see grandad and hold his hand.  I am so grateful for you all being there to look after him and let him know he is loved.  Lots of love and kisses”.  I read this to my mum and we both became weepy, she said how is it we have such lovely people in our lives. I think you get what you give.

Dad survived the night and was made comfortable by the Marie Curee nurse when he woke up and was breathless.  The carer came in and helped mum at 9am.  Andrew and Teresa got up and walked their dog, Bonnie the three miles to mum and dad’s flat.  Nick made a great FBB this morning.  FBB in our house stands for FAT BOYS BREAKFAST and included baked beans, bacon, eggs, tomatoes and toast.  Phoebe stayed behind to clear up and then we brought Miles and Corey up to the flat.  I knew this was going to be hard as it is horrid to see your children upset.  They stood and held hands with grandad whilst Nick and I made mum walk up to the shops with us.  After the deluge yesterday and all the flooding the sun was shining.  The leaves are turning and falling, beech nuts crunch underfoot and it is cooler.  Autumn is here and padded jackets the dress code of the day.  Where mum and dad live it is on the site of the former Royal Navy Engineering College, Manadon.  There are lots of trees, green space and the estate is made of different styles of housing it is pleasant with wide pavements.  We have an additional connection in that when Marcus, Phoebe and Miles were little I would bring them here to the RN Playgroup “Thunderchicks” as the site was HMS Thunderer.

Mum is 5 weeks post new hip.  She has been fairly diligent in doing her physio, despite trying circumstances, and is walking further.  We plodded up Bladder Lane, past St Boniface College and Church, under the underpass and into Crownhill.  Here the Co-op, just as in Stoke Village, is the mainstay of the row of shops.  We didn’t have much shopping to do only milk, biscuits and money.  I suggested we stop at the Tamar for a coffee, went in to order it and had to weave through people drinking pints as they were watching the rugby.  The Tamar couldn’t accommodate with coffee as they didn’t have any milk…. there is a Co-op 50m up the road!  It didn’t matter – it gave Miles and Corey time with grandad/Sandbag and time with Andrew and Teresa who hadn’t met Corey before.  During this time the team leader District Nurse,  visited dad.  She topped up the syringe driver with the comfort drugs and increased the dose of two of them again to keep him comfortable.  Before she left she asked to speak to us.  Out of earshot of dad she explained that we should start to listen out for changes in dad’s breathing.  We are in the final stages but there is no time line for this.  Dad can still say the odd phrase and word, such as lovely, wonderful and send the boys in… mainly he is sleeping and his breathing is better than it was.  We were told that the raspy breathing sounds worse for us than him. He has been coughing and I don’t think he will be having more liquids as they make him cough too much.

We have all told him he is much loved, he can hear us, when we speak to him we stand and hold his hand, his eyes don’t open much or at all now.  The consultant at Derriford was right when she said on 30th September “a good week -ten days” then the decline.  The decline started in earnest a week ago when the hospital bed was delivered, for us it was a terrible ordeal as it made the end somehow more palpable but dad was hugely relieved when it arrived.  He wants to die at home.  We can only sit by and watch and try and keep him as comfortable as possible.

We have been in a limbo land of grief for the last week, grief for the husband, father, grandad we knew, grief for the knowledge of what is coming and the void that will be left, grief as we have watched dad’s decline and seen him get weaker, grief at not really knowing what to do or what to expect.  There has been lots of love towards dad and between each of us in the family, no need to put on a show but be really honest with each other about our memories – good and bad, from the “stand by your beds” room inspection as kids to the fun we’ve had.  There has been real affection from the nurses and gratitude from us for all their care.

We are lucky as a family to have each other and it doesn’t matter how far away we are from each other.  In our kitchen we have a daft sign which says our family is held together by heart strings – these strings have been pulled to almost breaking point this week.